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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |
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#1
06-23-2006, 01:06 AM
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OK so i have been on this site for a few weeks now. my daughter has pierre robin sequence and i was just wondering if any other parents in here have a child with it. most of your children have similar anamolies and i have not seen anyone in here that shares my issues?...other than the trach's n g-tubes...so if anyone has a child iwth pierre robin,...let me know..
-kristen 
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#2
06-23-2006, 04:42 AM
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Kristen
I believe Meagan, Shelly's daughter (sixpackmom) has Pierre Robin sequence. I think there may be others too, you may have to check the kids with trachs pages.  Julie
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  Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
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#3
06-23-2006, 02:56 PM
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Hi Kristen,
My grandson Nathaniel has Pierre Robin Sequence. He was born 9-25-5 and was trached on 11-3-5. He is doing wonderfully right now. I would love to hear from you! Rachel
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Rachel - Grandma to Nathaniel 9-25-05, Pierre Robin Sequence, Sticklers Syndrome, Trach, Mic-key Button, Jaw Distraction (11-30-7), Decannulated 7-9-8, Retrached 12-10-8, Decannulated 9-30-9 and also Grandma to Ethan 9-7-08
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#4
06-23-2006, 09:59 PM
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Hi Kristen,
Yes my daughter Meagan does have prs and a cleft palete. I would love to hear from other parents with the same dx. I wonder if you ever go to the prs website? They have a lot of info on prs and a good support network. Shelly
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Mom of a teenager who wants me prematurely gray  , pre-teen twins, six yr. old tornado, & the amazing Meagan who overcame pierre robin, apnea, a cleft palate,laryngeotrachealmalasia, numerous surgeries and procedures to become a living curly haired angel. 
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#5
06-25-2006, 01:33 PM
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Lily has PRS and is 5 now. Her story is on page 10 of kids with trachs. Feel free to email or PM!
 Erica (Lily's Mom)
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 Our fabulous Lily was born 5-26-01 with partial trisomy 7q, Pierre-Robin sequence, VSD, GER; had trach, GT, Nissen at 4 weeks, cleft palate repair at 6 months and 18 months. Decannulated 11-15-04. Proud big sister to Benjamin 10-10-03, baby Vivienne 3-5-07!
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